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CookieSC

Neuropathy/Radiculopathy Throw Down

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CookieSC

I am GHSV2 positive with a full credential--an unequivocal and indisputable blood test with lots of little antibodies in it.  I even obtained an advanced degree--a biopsy of the first OB. I've had this nervous system infection for several years...yes, nervous system infection...not a dermatologic infection. It is a widely known fact that GHSV2 resides in the sacral ganglia.  Pesky things, them facts!!! 

My first OB presented with all the bells and whistles...and sirens.  Now, I rarely get OBs.  By rarely, I mean that I can go a couple of years or more without one.  However, I do frequently suffer from the same identical sacral nerve pain that I experienced when I had my first OB.  I did not experience this type of pain prior to being exposed to HSV2.   There are two reasons I use Valacyclovir, but I do not take it every day.  1. I want to decrease the likelihood of giving HSV2 to my significant other (I don't medicate daily because it was a LDR) and/or 2. I am in a lot of sacral nerve pain and I don't want to wait it out.  In my case, whether or not I use Valacyclovir, I rarely have an OB...I just have nerve pain.  The nerve pain is alleviated by taking Valacyclovir.  It's like prodrome nerve pain, but without the blisters.  Does anyone doubt what I am experiencing as being HSV2 related?  If so, please explain why.  Make sure you have done significant research and are able to post charts and graphs and multiple sources to back up your statements...because this shit's real 😤 

Edited by CookieSC

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CheekyMunkey

@CookieSC

Hey. Out of curiosity are you able to describe what nerve pain you get and where? Also does it just continue non stop or does it vanish and return intermittently? You mentioned you had a positive confirmation of HSV2 when this all started so I guess it makes sense to link them together. 

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CookieSC
5 hours ago, CheekyMunkey said:

@CookieSC

Hey. Out of curiosity are you able to describe what nerve pain you get and where? Also does it just continue non stop or does it vanish and return intermittently? You mentioned you had a positive confirmation of HSV2 when this all started so I guess it makes sense to link them together. 

It is an intense ache/stabbing type of pain that radiates from my butt cheek/hip area down to my calf.  It's usually in one leg much stronger than the other.  It is an intermittent pain, and, as I stated, I take Valacyclovir because sometimes it is too intense to wait out or, for many reasons, I don't want to use pain medication.  The Valacyclovir works great and the pain is gone quickly, as in a matter of hours.

 

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CookieSC

Links to validate the connection between HSV and neuropathy:

http://archneur.jamanetwork.com/mobile/article.aspx?articleid=795486

https://www.ninds.nih.gov/Disorders/Patient-Caregiver-Education/Fact-Sheets/Peripheral-Neuropathy-Fact-Sheet

https://jamanetwork.com/journals/jamaneurology/fullarticle/795486  which may just be a more comprehensive article than the first link.  

I have quite a bit of experience with the medical industry and have seen some horrific cases of misdiagnoses and outright deception.  My own ex-husband was misdiagnosed as having cancer when, in fact, he did not have it.  Even though we sought a second opinion from a NIH CCC, he got rushed into treatment and had two unnecessary surgeries, two weeks of chemotherapy and two radiation treatments before the second opinion came in.  Yep.  He was treated for a cancer he didn't have.  It was a nightmare.  Doctors scurried around securing third opinions (the tie-breaker) from colleagues that were "in pocket" and didn't have the credentials we were told they had.  We were badgered with phone calls and certified mail that told us he was going to die if he didn't get back into radiation treatment. I did a lot of research that disputed claims the treating oncologists were making about his non-existent cancer and I uncovered and exposed lies and misrepresentations. 

There's so much more to the story, but the takeaway here is that even the people who treat conditions day in and day out make mistakes and make decisions and assumptions based on obsolete, faulty, or incomplete data.  It's important to do your own research and be your own advocate.  Dig for answers if what the doctors are telling you just doesn't feel quite right.  I did a metric shit ton of research when my husband was sick, and helped save him from enduring a treatment protocol that would have completely destroyed his quality of life and possibly would have eventually killed him. 

Read the personal accounts of HSV2 patients here, particularly two that go by lynn and diana:

https://patient.info/forums/discuss/hsv2-peripheral-neuropathy-488870
 

Diana does an excellent job of advocating for herself.

 

Edited by CookieSC

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blurneworder
3 hours ago, CookieSC said:

Links to validate the connection between HSV and neuropathy:

http://archneur.jamanetwork.com/mobile/article.aspx?articleid=795486

https://www.ninds.nih.gov/Disorders/Patient-Caregiver-Education/Fact-Sheets/Peripheral-Neuropathy-Fact-Sheet

https://jamanetwork.com/journals/jamaneurology/fullarticle/795486  which may just be a more comprehensive article than the first link.  

I have quite a bit of experience with the medical industry and have seen some horrific cases of misdiagnoses and outright deception.  My own ex-husband was misdiagnosed as having cancer when, in fact, he did not have it.  Even though we sought a second opinion from a NIH CCC, he got rushed into treatment and had two unnecessary surgeries, two weeks of chemotherapy and two radiation treatments before the second opinion came in.  Yep.  He was treated for a cancer he didn't have.  It was a nightmare.  Doctors scurried around securing third opinions (the tie-breaker) from colleagues that were "in pocket" and didn't have the credentials we were told they had.  We were badgered with phone calls and certified mail that told us he was going to die if he didn't get back into radiation treatment. I did a lot of research that disputed claims the treating oncologists were making about his non-existent cancer and I uncovered and exposed lies and misrepresentations. 

There's so much more to the story, but the takeaway here is that even the people who treat conditions day in and day out make mistakes and make decisions and assumptions based on obsolete, faulty, or incomplete data.  It's important to do your own research and be your own advocate.  Dig for answers if what the doctors are telling you just doesn't feel quite right.  I did a metric shit ton of research when my husband was sick, and helped save him from enduring a treatment protocol that would have completely destroyed his quality of life and possibly would have eventually killed him. 

Read the personal accounts of HSV2 patients here, particularly two that go by lynn and diana:

https://patient.info/forums/discuss/hsv2-peripheral-neuropathy-488870
 

Diana does an excellent job of advocating for herself.

 

You are so right about being an advocate for yourself.

I like that you provide sources for your claims, and that you don’t discredit personal experiences of others.

In my opinion, certain people on this forum are too quick to debunk personal experiences.

Edited by blurneworder

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CookieSC
20 hours ago, blurneworder said:

You are so right about being an advocate for yourself.

I like that you provide sources for your claims, and that you don’t discredit personal experiences of others.

In my opinion, certain people on this forum are too quick to debunk personal experiences.

Thank you.  There are case studies, post mortem statistics, etc. that back what I have written about my own nerve pain.  When people deny people's experiences and refuse to consult research findings, they hurt others. It's inexcusable.  

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CheekyMunkey
On 8/23/2019 at 3:06 AM, CookieSC said:

It is an intense ache/stabbing type of pain that radiates from my butt cheek/hip area down to my calf.  It's usually in one leg much stronger than the other.  It is an intermittent pain, and, as I stated, I take Valacyclovir because sometimes it is too intense to wait out or, for many reasons, I don't want to use pain medication.  The Valacyclovir works great and the pain is gone quickly, as in a matter of hours.

 

Hi CookieSC,

Thanks for coming back to me. Im going to get tested for HSV 1/2 this week or the next as its been 12 or so weeks since exposure. Since my first encounter I recognised itching in my legs when I wore fitted jeans but its now in my hands, arms, shoulders, chest shoulder blades, ankles, glutes, feet. Shins feel like they have static on the hairs and on my face. etc. Anyways, the girl I was seeing at the time said she never had any symptoms of HSV so has never been tested. However, she did say she has had kidney problems since being a child and gets UTIs regularly because of a small urethra. Ive heard these can sometimes be mistaken as UTIs but they are actually as a result of HSV. Now Im not saying this is all HSV. Problem is the Drs will not test for HSV as I have had no breakouts/sores etc. Im assuming its hsv because of the nerve related issues and its the only test that hasnt been done. Im negative for all other things. 

The reason Im a bit confused is that I have a history of a herniated disc whitch causes nerve pain down my left leg, calve, heel of my foot which I also injured a little during the time of this encounter.

Anyways, Im going to get tested now and I guess I will find out where I stand. The reason many people do not think its HSV is because I am itching/tingling all over and not just in my legs. A little on and off in my penile area but it itches more else where.

Hoping its not HSV. If its not then its a case of what the heck am I having a reaction too.. Ive had cold sores as a child so I expect to has HSV1 already.

 

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